fx info Winter Spring 2014

fx info

www.fragilex.org.au https://www.facebook.com/fxAus

Spring 2014

1300 394 636 (free call) or (02) 9977 0074 support@fragilex.org.au

In this edition:        

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Fragile X Awareness in July campaign - media coverage, gala dinners & more!

Stepping Stones Triple P program - supporting families with special needs Fragile X Association - new Board for 2014-2015 and appointment of Honorary Members International Day of Disability - coming up on 3 December Workplace Giving - a great way to support Fragile X Association Raising Awareness of Fragile X - running, cycling, walking!

Footprint Books - special discount offer Special Olympics Roundup - Matthew, Kieran and Marty Profiling MoveAbout Therapy Services Boosting Awareness of Fragile X within the Medical Community Christmas Cards Member Stories

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We’d like to thank all of the state Members of Parliament who showed their support for Fragile X Awareness during our campaign in July.

The orange ribbon was everywhere! Facebook, twitter, TV, official events!

Some MPs also sent the Association letters of support: Hon Colin Barnett, Premier of WA and the Hon Campbell Newman, Premier of Qld, and Federal Assistant Minister for Social Services Senator Mitch Fifield. We also received calls of support from the offices of the Hon Peter Dutton, Federal Minister for Health, and the office of the Leader of the Opposition, Hon Bill Shorten MP.

Hon Will Hodgman Premier of Tasmania

Hon Mike Baird Premier of New South Wales

Hon Jay Weatherill Premier of South Australia

Hon John Ajaka Minister for Disability Services, NSW

Hon Pru Goward Minister for Women, NSW

Dr Denis Napthine Premier of Victoria

Hon Andrew Powell Minister for Environment & Heritage Protection, QLD

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Many thanks to Network Ten for their outstanding support during Fragile X Awareness month, in particular the Studio 10 team.

A fantastic profile story of Rachael Clements and her family, including her two young sons Michael and Ben who have Fragile X, aired on Network Ten’s Studio 10 program on 22 July, Fragile Awareness day.

The 8-minute video is available on YouTube.

Sandra Sully tweeted this fabulous photo - to her 75,000 followers!

Dr Cynthia Roberts, whose young adult son Dan lives with Fragile X, interviewed on ABC Radio 702 AM in Sydney by Linda Mottram on 22 July.

ABC radio in Adelaide also carried a story on Fragile X on July 22nd.

Jimmy Jones and his family were profiled in the Ballarat Courier.

More tweets: from Sydney radio station hosts Amanda & Jonesy Jay Weatherill, Premier of SA, on ABC News on 22 July

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Peninsula Living magazine from the Northern Beaches in Sydney, with a readership of 80,000, ran a great 2-page spread on Fragile X, including a profile of Marty Campbell.

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Fragile X Awareness Month always seems to come around so quickly!

This year when the Association told me about the Virtual Walk site I was very excited. I posted the Virtual Walk all over my Facebook page and it soon started clicking over with donations.....

A local cafe that my family and I frequently regularly (many times a week)! suggested we make the virtual walk a reality.

I thought this was a pretty good idea as we are very blessed in Ballarat to have a beautiful lake that has a 6km walking track around it so perfect location for our walk!

Ballarat is also known for its let's just say chilly weather conditions so Sunday the 27th was not the warmest day for a walk.

However we all gathered with our coats, gloves, beanies, prams, scooters & bikes ready to tackle the fragile x walk. Within the group we had two boys or our "guests of honour" one on his scooter the other walking his dog both amazing little men. All of us so proud to be walking with them.

I'm pretty sure all the children loved it having races amongst themselves and being out in the fresh air stopping in the playground for a few swings, slides and just a good time.

The walked ended with cheers all round what a jolly good idea this walk was especially being outside enjoying each other's company and tiring out the kids!! There will definitely be a next year and possibly a next week!

Sarah Jones, Ballarat, Victoria

Team Jimmy Jones - Ballarat

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The Virtual Walk was a great success!

It might have been a bit wintry in some places Launceston and Ballarat, at least - but that didn’t stop anyone from walking or riding the 5kms!

When Harry Met Tommy!

We were thrilled that the Fragile X Association of Australia organised the Virtual Walk, giving us the opportunity to be involved and raise awareness of this relatively unknown syndrome.

(Being in Tasmania it's hard to attend things and get actively involved so the Virtual Walk was a fabulous initiative to provide).

My two nephews Harry and Thomas Colgrave have Fragile X so it was great to be able to support them and enlighten some of our friends about the syndrome.

It was a simple process to create a team and invite friends and family to participate or sponsor the virtual walk.

After creating a team I promoted the walk on social media (primarily to our touch football club who then shared the information with friends and family of their own.)

A date was chosen, a location found and measured (to make sure we did the 5ks!) and then details promoted a few times along with updates on the generosity of sponsors and how well our team was doing.

Our Hazards team "When Harry met Tommy" met at the Inveresk Railyards in Launceston on the 27th July.

It was a cold and foggy morning, just 5 degrees but that didn't dampen anyone's spirits. 32 of us walked the lovely 5ks from Inveresk to Heritage Forest and back. Finishing at the Blue Cafe, where we said 'a few words' and enjoyed a coffee and some lunch.

It was a really good day, in fact I couldn't think of a better excuse to catch up with friends and family.

It's rewarding to know we have helped contribute to the awareness of Fragile X and financially assisted the cause.

Our little team raised $2160 and we can't wait to do bigger and better next year!

Kate Stokes, Launceston, Tasmania

The Hazards - Launceston Page Page 5 5

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Mufti day at Clayton Rasmussen’s school in support of Fragile X for Patrick

Free dress day at River Maxwell’s school in support of Fragile X

Mufti day fundraiser

Gold coin morning tea

Gold coin morning tea

The Mostly Music class & teachers at King’s College in Warrnambool wearing their ribbons for Fragile X Day

Fragile X Goodies

Luciana and her family organised a fun FX information stall at a shopping centre in Sydney Page 6

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Dale put his FX apron to great use in Canberra, hosting a FX BBQ for work colleagues Fragile X Association of Australia

Galas in July !

Fragile X Association Board members Jeremy Sweeney and Candice Stingel hosted inaugural Gala dinners in Perth and Brisbane in July for Fragile X Awareness month.

Both events were a great success! In terms of raising awareness of Fragile X and in raising funds for the Association.

The Gala Dinners events were very well supported by local community businesses who provided raffle prizes and made donations.

Many thanks to the Hon Andrew Powell, MP, from the Queensland electorate of Glass House, and to his office team, who were guests of honour in Brisbane, and to Jeremy’s wife Shante Sweeney for organising the Perth event.

Perth

Brisbane

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Congratulations and many thanks to Rebecca Mercuri and mother-daughter team Cynthia Roberts & Amy Simpson for sensational fundraising efforts this year!

And thanks to Amy’s boyfriend Evan who ran in the City2Surf for her on the day because she was very ill!

Cynthia

The Bridge to Brisbane was a sea of orange !

Several teams were fielded this year.

Claire Bradley says : “Our team started at the gala dinner organized by Candy Stingel.

Two of my close friends from work came with their partners to support John and I, and over the course of the evening, we were inspired to raise awareness of Fragile X by walking the Bridge to Brisbane.

We started with 3, ended up with 21 people and 4 littlies in strollers, and 2 10km runners......who knows how many we can involve next year!!! “

Candy Stingel’s own Orange Army met her at the finish line of the bike race in September.

Candy took on a punishing ride and raised over $5,000 for Fragile X Association!!

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Special Olympics Roundup What an event! In October the Special Olympics in Melbourne brought together 900 athletes and officials.

Congratulations to all the participants! And special congratulations to Fragile X Association members who competed in events: including Matt Bowen from Deloraine in Tasmania, and Marty Campbell and Kieran Kelleher from Sydney.

Matt Bowen (centre) with his coach and golfing partner

Matthew was selected for the first time in the Tasmania Special Olympics team to compete at the National Games. He competed in golf which was played at the Albert Park golf course over three days and there were over 30 golfers from around Australia competing. There were only two golfers in the Tasmanian team.

Matthew was in level 5 Division 2 event over two days which consisted of 18 holes on each day. On the second day the temperature reached 30 degrees. Matthew placed 4th in Division 2. On the third day he played in a nine hole Ambrose competition partnered with various sponsors and other representatives. His team placed third in this competition and Matthew won nearest the pin. This was a great experience for Matthew and he thoroughly enjoyed himself. He has some wonderful memories of this event. As his parents we were extremely proud of Matthew!

Sue & Greg Bowen

Marty competed in the Tennis. He won gold in his division for doubles and was sixth for singles. Marty played very well. He was unlucky in the singles as he won 2, and lost the third on a tiebreaker.

Marty is very happy! and his family have said it’s a great outcome.

Marty now has his fingers crossed that he’ll be selected for the international games in L.A. in July 2015.

Marty Campbell (centre)

Kieran represented the Sydney Northern Beaches in the basketball.

It was a very successful week.

Kieran played well with his teammates and the result was a bronze medal!

Kieran Kelleher Page 9

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Stepping Stones Triple P supports families with special needs Supermarket meltdowns? Mealtime tantrums? Bedtime battles? When you’re the parent or caregiver of a child with a disability, sometimes life can be extra challenging.

Stepping Stones Triple P gives you tips and strategies to manage the big and small problems of family life. It helps encourage behaviour you like, cope with stress and teach your child new skills.

Stepping Stones Triple P Project – An update - by Kristina Clarke, Brain & Mind Research Institute, University of Sydney The Stepping Stones Triple P Project is rolling out Stepping Stones programs to families in Qld, Vic and NSW. The federally-funded project aims to reduce behavioural and emotional problems in young people with developmental disabilities, decrease family stress, and increase parent confidence in managing challenging behaviours.

Stepping Stones programs are evidence-based and specially tailored for families who have a child with a disability.

A part of the program is tailored for families of children with Fragile X syndrome, with specific tip sheets among the resources.

NSW parents update In NSW, free Stepping Stones Triple P parenting programs will be available from early 2015 for parents and caregivers of children with a disability aged to 2 to 12 years.

The NSW project is currently in the first stage or the project – the My Say survey – which is gathering benchmark data about the need for disability-specific parenting support in NSW. If your child is aged between 2 to 10 years, have your say at www.mysay.org.au and let the research team know what highlights and challenges you experience with your child. Is there a particular type of parenting support that would help you to care for your child with Fragile X? Your voices are being used to plan the roll out of the Stepping Stones programs. Regions identified as having a high need for parenting support will be primary areas for training community professionals to deliver programs. Information from the My Say survey will also be used to advocate for ongoing support for parents who have a child with a disability.

The survey has been open in NSW for 8 months and over 200 families have told us their story and we thank them all.

However, our Project goal is to reach 500 families by the end of 2014, so they need your help!

Please share this information with your community and make sure that children with Fragile X and their families are part of the conversation.

The My Say survey is the first place to register your interest in receiving a Stepping Stones program. The research team will contact you in 2015 when programs become available in your area.

The NSW research team is happy to talk to you and answer any questions. Contact fhs.steppingstones@sydney.edu.au or (02) 9114 4060. You can also follow the SSTP Project on their Facebook page https://www.facebook.com/SteppingStonesTriplePProject.

QLD and VIC parents update Stepping Stones programs are currently available to parents in Queensland and Victoria. You can access different program types from a local provider. Visit www.triplep-steppingstones.net/au-en/home/ to read about the programs and check availability in your area.

For more information. In Queensland contact: steppingstones@psy.uq.edu.au or (07) 3365 6499.

In Victoria contact: med-steppingstones@monash.edu or (03) 9905 0154.

WA, NT, SA, ACT and TAS parents update The Stepping Stones Triple P (SSTP) Project is currently only funded to provide programs to parents in QLD, VIC and NSW. The aim is for the project to generate ongoing funding and support for families across Australia to receive Stepping Stones programs.

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International Day of People with Disability This is a United Nations sanctioned day that aims to promote an understanding of people with disability and encourage support for their dignity, rights and well-being.

Assistant Minister for Social Services Mitch Fifield has encouraged all Australians to help celebrate by holding or attending an event in their local area.

Last year schools, businesses and communities around Australia hosted morning teas, seminars, barbeques and other events to celebrate International Day of People with Disability on 3 December.

Look out for events in your area, or plan something!

Ideas and resources are on the IDPWD website: www.idpwd.com.au and IWPD facebook page: www.facebook.com/idpwd

3 December is an ideal day to wear the Fragile X ribbon !

Get in touch and we'll post ribbons to you: support@fragilex.org.au

Workplace Giving - great way to support Fragile X Association Did you know that if just 10% of Australia’s workforce made a $5 a week payroll donation through Workplace Giving programs, it would generate over $300 million in donations to charitable organisations, such as the Fragile X Association?

Imagine what a difference this could make!

Workplace Giving is an easy and effective way to donate regularly to the Association from pre-tax salary. Pre-tax donations are processed automatically from your company’s payroll. It is a convenient, paper-free and tax-effective way to donate, without the usual delays of claiming-back PAYG deductible donations.

Donating your pre-tax income makes every dollar count even more. For example, a $20 donation to a charity pre-tax costs the donor $13.70 after the automatic tax deduction. The charity, however, receives the full $20 (dependent on marginal tax rate).

Some corporate organisations will also match the donations made by individual employees, doubling the impact of the business’ collective support.

If you work for a corporate organisation or run your own business, Workplace Giving may be the perfect vehicle to raise money for the Association and generate awareness of Fragile X. It’s also a great way to encourage employee engagement and build a corporate culture of caring and giving.

Fragile X Association is registered with Charities Aid Foundation, an organisation that supports the operation of workplace giving programs and may be able to provide you with further guidance.

Is Workplace Giving is something you want to be a part of to make a difference?

Contact Wendy and we can provide you with further information: wendy@fragilex.org.au or 1300 394 636 Page Page 11 11

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Footprint Books is a specialist bookseller and distributor. It represents a leading international publisher of books on Autism, Asperger Syndrome & related conditions.

Footprint Books is offering Fragile X Association members a 15% discount and free delivery on orders placed before 20 December.

Danielle from Footprint shares their story and reviews a recent book.

Our Story:

Footprint Books has been working with and supporting the Autism community since 2003. In that year, we were invited to represent Jessica Kingsley Publishers, the leading international publisher of books on Autism, Aspergers Syndrome, and related conditions. Jessica Kingsley herself travelled to Australia from the UK to attend the inaugural Australasian Autism conference and, after receiving an overwhelming reception to her books, she decided to change her representation and appointed Footprint as their partner in Australia and New Zealand. At this time, Footprint was much smaller and not well acquainted with the Autism Community but over the years we have attended many conferences, met heaps of wonderful people, and learnt a lot.

We have built close relationships with many Autism organisations around the country and New Zealand, donated many books to their libraries for lending to the wider community and celebrated this amazing cause by running fundraising events within our organisation. We have developed affiliate programmes with many of the Associations, with others in the works, and we also run promotions with our retail customers each year on World Autism Awareness Day to raise money and awareness for Autism and related conditions.

Kids in the Syndrome Mix of ADHD, LD, Autism Spectrum, Tourette's, Anxiety and More!: The one stop guide for parents, teachers and other professionals Second Edition.

By Martin L Kutscher This all-in-one guide covers the whole range of often co-existing neuro-behavioural disorders in children – from attention deficit hyperactivity disorder (ADHD), obsessive -compulsive disorder, and anxiety, to autism spectrum disorders, non-verbal learning disabilities, Tourette's, sensory integration problems, and executive dysfunction.

Dr Kutscher provides accessible information on causes, symptoms, interactions with other conditions, and treatments. He presents effective behavioural strategies for responding to children who display traits of these disorders – whether at home, at school, or in other settings – along with case vignettes and practical tips. The author's sympathetic yet upbeat approach and skillful explanations of the inner world of children in the syndrome mix make this an invaluable companion for parents, teachers, professionals, and anyone else who needs fast and to-the-point advice on children with special needs.

256pp A$33.95 Jessica Kingsley Publishers

“This is the first book anyone attempting to understand a child with these disorders should read. Dr. Kutscher takes complex medical information and transforms it into a reader friendly format for the non-professional . . . I will be recommending this book to parents, educators and anyone else wishing to help these children lead happy and successful lives.” Heidi Bernhardt, mother of three grown sons with ADHD and Founder, President and Executive Director of CADDAC (Centre for ADHD Awareness Canada)

Discount Offer for Fragile X Association members Receive 15% discount and free delivery Enter FX15 at the online checkout or quote over the phone Valid until 20 December 2014 Page 12

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The Footprint Books team

www.footprint.com.au info@footprint.com.au 02 9997 3973 www.facebook.com/FootprintBooksAutism www.twitter.com/FootprintAutism www.pinterest.com/FootprintBooks1 Fragile X Association of Australia

Inspired by Nature..... I Kid Ewe Not! Bianca Ward, from East Gippsland in Victoria, shares the story of her successful business making and selling a range of goat, sheep and buffalo milk soaps.

Bianca’s market stalls and online ordering are also proving to be a great way to raise awareness of Fragile X. “I am married with 3 children, all with Fragile X syndrome Full Mutation: Michaela is 16 years old, Darci is 14 and Cooper-Jess is 5. Our family only received a diagnosis of FX once Cooper was diagnosed with it at 18mths of age.

I started making soap when our son Cooper suffered from eczema and shop bought products were not proving to be of any help. All my soaps are made in my own home in Nicholson in East Gippsland where we live on 6.5 acres.

I source products locally when and where possible, our goats milk comes fresh from my friend Robyn who breeds goats at Lakes Entrance. I attend local markets including Bruthen, Lakes Entrance, Paynesville, Maffra, Nicholson, Bairnsdale.

I enjoy meeting and speaking with new people every weekend and thought it would be a great opportunity for me to raise awareness of FX by selling my 'Amber' soap as a 'Fragile X' soap and having proceeds of the sale of this soap being donated to the Fragile X Association of Australia.

I like to educate people about the qualities of both goat and sheeps milk, and how they can help improve and soothe symptoms of eczema, psoriasis, dermatitis and dry itchy skin.

Most people don't know that sheeps milk has a lot higher fat content than goats milk, providing a greater moisturising effect. It also has 5 times more vitamin C and folic acid than goats milk. Sheeps milk also contains lactic acid which is a natural gentle exfoliant for your skin leaving it soft and glowing.

Going to markets has helped me step outside my comfort zone and speak with people. I love receiving feedback from my customers about how my soaps have helped them get relief from their skin conditions.”

Bianca’s soaps can be ordered directly from the Nicholson River Soaps website www.nicholsonriversoaps.com Keep up with Bianca’s news about markets and products on the Nicholson River Soaps facebook page.

FX Necklaces and Key Chains Candy Stingel, Fragile X Association Board member, has designed some fabulous Fragile X jewellery!

Each item can be customised with birth stones of your choice.

Necklaces and key chains are $25 each, with all profit donated to Fragile X Association.

To order: contact Candy by email: cozziejunior@gmail.com

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Photo gallery

Oscar Geeves and Carolyn Rogers catch up for a bike ride: Batemans Bay

June and her gorgeous grandson

Info stall at Seymour Disability Expo Shante, Tyler and Jeremy Sweeney with Robyn Iredale and Tim Turpin in Perth

Jonathan Patrick loving the Oz Comic Con event!

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Aprons, anyone??

Fragile X Association member Ricky Crowe has kindly donated a bundle of brand new black waiter aprons to Fragile X. Thanks Ricky!

The aprons fit adults or kids, and are perfect for summer BBQing.

With the Fragile X logo applied, they’re now ready to be given away to good homes!

These aprons are free: let us know if you’d like a couple Jazmin and her mum and dad, Paul and Lyn, love them!

Paul says “we are going using the them to help Jazmin with her limited diet - dressing up in our aprons to prepare and cook meals.

Jazmin’s selections of foods that she consumes is so limited and only includes a couple of her favourites which are consumed over and over.

She enjoys being involved in the processes of organizing a meal from start to finish, but is very picky on which foods she will actually eat.

We had earlier told her that an apron was coming from the Fragile X Association. As soon as she got home from school she raced into me to ask if the apron had arrived. Being very excited with her new apron, we put it on her and spoke about using it to prepare and create some new meals for Jazmin to try.”

Jazmin Junior Master Chef!

Iron-on Fragile X labels Perfect for tshirts, running singlets, sweatshirts.

Available from support@fragilex..org.au

Fragile X Fact Sheets The Association has developed a series of Fact Sheets to provide information on Fragile X-associated disorders.

Download from www.fragilex.org.au 1: Fragile X Glossary of Terms 2: What is Fragile X syndrome 3: Prevalence of Fragile X syndrome

4: Carriers of Fragile X syndrome 5: Reproductive Options 6: FXTAS

Congrats to Bianca who won our Awareness Day Fundraiser raffle prize of a day-sail on Sydney Harbour on Team Australia: Sean Langman’s Orma trimaran The fastest boat in the Southern Hemisphere!

John Kelleher drew the winning ticket

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And many thanks to ticket seller extraordinaire Ricky Crowe!

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Fragile X Association of Australia Dear Members and Friends, At our recent AGM seven members were re-elected to the Board for 2014-2015: Bruce Donald, Tim Turpin, Simone Zaia, Cathy Love, Candice Stingel, Jeremy Sweeney. I’m delighted that they are committed to continuing in their roles, and wish to thank them for their hard work and enthusiasm. I’m also delighted to add that, since the AGM, Judith Lenart has joined the Board. Judith has a strong background in business and in the not-for-profit sector, and is based in Sydney.

The Board for 2013/14 comprised nine people: four from NSW and five from Queensland, Victoria and Western Australia. This worked extremely well. Candy and Jeremy as many of you know have been very involved in awareness and fund-raising in their QLD and WA. Having Cathy, a Occupational Therapist, on the Board has given us much better access to Better Start and Carers Australia. Bruce ‘s work as Treasurer has been exhaustive and has improved the accounts process and decreased costs. Nevertheless, it is hard to meet our operating costs, let alone having the money to run workshops. Tim has chaired our Scientific and Research Committee and enlarged it so that we now have most Australian Fragile X researchers involved. This committee provides a good sounding board. The members have also provided key input to our Fact Sheets, and our new medical community communications strategy project being run by Katrina Weir, and which is funded by a generous donor family.

This year’s Fragile X awareness month in July was by far the best yet. Network 10 was very supportive and provided a great deal of exposure for Fragile X this year. In particular the Studio 10 featuring Rachael Clements and her family was exceptional for its length and in depth look approach. There have been over 800 views of the interview on YouTube, which shows the ripple effect of social media. Other Network 10 programs also profiled Fragile X during July. We are very grateful to Azar Marashian for making such a pivotal media contact for us. Other media included an interview on ABC radio in Sydney with Dr Cynthia Roberts, whose son Dan lives with Fragile X, and further ABC radio coverage in Adelaide, and We’re very grateful to individual families for taking their stories to the media, and for the interest and support of Network 10 and ABC for Fragile X. Other elements that worked well to raise awareness this year were: our social media Orange Ribbon campaign with politicians at the state level and media personalities  very successful Gala Dinners in Perth and Brisbane the new Fragile X posters and banners  the Virtual Walk which was beneficial both financially and in terms of awareness raising I would like to thank Royal Bank of Canada, the ICAP Charity Day, and the Queensland chapter of the Australian Retired Pilots Association for making generous donations recently. These funds will be put towards mobile assessment clinics and workshops as we secure additional funding.

All the very best, Robyn Iredale President

For all our latest news: facebook and www.fragilex.org.au

The team in the office There’s someone here in the office every weekday.

If we can help with anything please get in touch: 1300 394 636 or 02 9977 0074 support@fragilex.org.au Janie

Wendy

Liz

Farewell and best wishes to Joan MacDonald who recently left Fragile X Association.

Over the past 3 busy years with the Association Joan’s enthusiasm and commitment have generated some great initiatives. To name just a few: bringing the Mission to Lars movie to Australia, coordinating Fragile X workshops in various states, kicking off the annual OceanPaddler fundraising event in Manly, setting up the Virtual Walk for Fragile X awareness month this July, and coordinating assessment clinics in Sydney. Joan’s sense of humour, good cheer and sincere support for FX families is missed, and we thank her for her all that she did.

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Fragile X Association Board 2014-2015

Robyn Iredale President (NSW)

Bruce Donald Treasurer (NSW)

Cathy Love (VIC)

Tim Turpin Secretary (NSW)

Simone Zaia (NSW)

Jeremy Sweeney (WA)

Candice Stingel (QLD)

Judith Lenart (NSW)

The Annual General Meeting of Fragile X Association was held in Sydney on 6 September.

Robyn, Bruce, Tim, Simone, Candice, Cathy and Jeremy were voted to return to the Board for a further term. Judith Lenart joined the Board in October. Brief bios of each of the Board members can be found at www.fragilex.org.au

Newly appointed Honorary Members of the Association Mrs Trish Piper and Mrs Barbie Barrett have been a formidable fundraising team for Fragile X Association over more than 10 years! Between them they have raised $45,000 through an annual Card Day event in Dural, in northern Sydney. Their contribution in raising awareness and funds for the Association has been outstanding.

Mrs Trish Piper

Mrs Barbie Barratt

Dr Danuta Loesch

Dr Danuta Loesch is Senior Research Fellow at the School of Psychological Science, La Trobe University in Melbourne. She obtained her medical degree, specialising in clinical neurology, at Warsaw University. A major focus of her early studies in Australia concerned the newly discovered Fragile X Syndrome (FXS). Her more recent research has focused on clinical and genetic studies of the FXTAS spectrum, and some low-symptomatic conditions, associated with the FMR1 premutation alleles. Dr Loesch’s research has attracted extensive international collaboration and involves neurology and/or genetics institutions in Melbourne and Brisbane. She has published over 160 original papers in peer-reviewed scientific journals, several book chapters, and one full book.

More extensive detail of Dr Loesch’s contributions in the area of Fragile X-associated disorders can be found at: www.fragilex.org.au Annual Report Our Annual Report for 2013-2014 provides a great survey of the activities and the work of the organisation over the 12-month period.

Available from: www.fragilex.org.au or by email : support@fragilex.org.au Page Page 17 17

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Counselling

Janie Roberts is the Fragile X Association counsellor.

Counselling offers empathetic listening, a non-judgmental attitude, a safe place to vent, and an opportunity to consider new insights and perspectives. Janie has experience with counselling in areas of anxiety, depression, isolation, grief and loss, finding balance, feelings of guilt, maintaining hope, relinquishing care, domestic violence and trauma, and changes in relationships.

Janie encourages families, couples, siblings, and individuals to contact her for phone -based counselling support or face-to-face support (in the Sydney area).

The counselling provided is free and confidential.

To contact Janie: 1300 394 636 (free call)

or 02 9977 0074 or email: janie@fragilex.org.au

Resilience I have had a number of conversations recently where I have been inspired by the way in which people are able to cope with significant problems in their lives and seemingly bounce back from setbacks. Resilience is that ability to be knocked down but come back stronger.

I often visualise walking on the pathways of life where there are always obstacles to overcome. My conversations with others show me that people have a great capacity to creatively deal with those obstacles. Whether we climb over them, take a rest and wait for them to pass, skirt around them or take a different path...we are always learning and moving forward.

Studies have brought to light some of the factors that help with resilience and these include having a positive attitude, being flexible, being able to manage strong emotions, having self-confidence, having skills in communicating and problem solving, having supportive relationships and possessing the ability to regard failure as a learning experience.

Anne Deveson has written extensively on the subject of resilience and describes how it involves maintaining balance in your life as you deal with stressful situations. She says, “Hope is important: learning how to ask for help; humour; viewing yourself and others in terms of strengths not weaknesses; and having some kind of meaning in life – which does not necessarily mean some kind of formal religion”. She notes the value of having friendships and supportive relationships in which “people feel needed, through listening, through acceptance, and through finding those things that bring joy in life. Ultimately, a sense of connectedness lies at the heart of resilience” (Deveson, A. (2004). The importance of ‘resilience’ in helping people to cope with adversity. www.onlineopinion.com.au )

Janie has a Master’s in Counselling and Psychotherapy. She is a clinical member of Counsellors and Psychotherapists Association of New South Wales Inc (CAPA) and Psychotherapy and Counselling Federation of Australia (PACFA).

Prior to training as a counsellor Janie worked for over 10 years with adults and children with disabilities in day centres and schools.

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Zoe’s Story Zoe is a woman affected by Fragile X syndrome and she has agreed to share her perspective on the topic of resilience: Thank you Zoe for agreeing to be interviewed. I am interested to know how Fragile X impacts in your life?

Fragile X has been with me since birth and I didn’t know about it until I was 10. Before I was 10 I knew there was a problem with reading, comprehension and maths but I didn’t know why. It was not so obvious for me and I would say that the lack of understanding about Fragile X syndrome has been my biggest hurdle. People have different expectations of you when you are seen as having a disability and mine is not obvious so people have higher expectations. It hasn’t been a plain sailing experience. I know I can’t be a scientist, doctor or lawyer because my intelligences don’t really fit into those careers. I know my limitations and I believe that life is too short to worry about your deficiencies. Fragile X also affects my eye contact though mine is getting better. I don’t see myself as any better or worse than anyone else.

What have you achieved in spite of the influence of Fragile X? I’ve travelled around the world. I’ve pursued my passions which are visual arts and special needs. I completed high school, achieved an honours degree at Sydney Uni in visual arts then followed that with a Masters. I then went on to do a Grad Dip in Education at the Australian Catholic University and I am currently studying the Masters of Special Education at the University of Western Sydney. Along with study I volunteer at two special schools – one primary and one secondary.

How have you managed these achievements?

With hard work and perseverance! If you love what you’re doing you will throw yourself into it.

For me the right environment is important and needs to include having stimulation, being engaged, feeling connected, feeling my personal attributes and qualities and having self-awareness of what you know you can do and going about the process of achieving it. It doesn’t matter how long it’s going to take you. Don’t listen to people putting limitations of your life as you know your own limitations. It is important to set the bar at a realistic level. You set the standard for you. Comparisons to others are not helpful.

How have you managed difficult situations in the past?

I have had certain situations where people have said nasty comments and I have used sheer determination to get through difficulties. I have experienced bullying and believe that ‘what doesn’t kill you makes you stronger’.

Change environments if they don’t suit you and know your self-worth.

What helps you to maintain a hopeful view of the future?

I focus on strengths not weaknesses and have a ‘can do’ attitude. It goes back to the self-worth stuff. Employment for instance is a challenge for people with or without disabilities. If you have a desire or interest and you want to pursue it, just pursue it. Don’t close your mind to things – be open minded if possible. Things will make sense eventually. Reassess and be flexible. Have support networks around you as you may not be able to do it for yourself.

What do you know about yourself that can help you through difficult times?

I know myself well and I believe in myself. Life can throw up obstacles and you make a decision based on the situation and you’ll figure out a way around it to suit yourself. I look at the bigger picture and know I’m not alone.

Positive people are important to bounce ideas off. Life can be frustrating and if you were to pick one of the disabilities in the world I think I’ve got one of the worst ones but I don’t spend time dwelling on that.

Thank you so much Zoe for your insightful and inspiring comments.

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A Mother’s Story

Written by a Fragile X Association member

This is not an easy dialogue to relate to anyone let alone to parents of Autistic/Fragile X children but as the mother of Autistic/Fragile X children I feel I would be failing other parents and their children if I did not tell what happened to my Autistic son.

My son was diagnosed at 19 months as having Fragile X. I was told his intellectual development would only reach between 6 and 12 years old. I said I would aim for 9 years old.

Over the following 18 months the prognosis did not add up. Whilst his physical development was behind, his language almost nonexistent (except to the budgies and the washing machine) his comprehension was spot on.

So after 2 months of every assessment possible my son was diagnosed as having mild to moderate Autism. Early Intervention programs followed where my son was scoring above his age group. My son then went to kinder where the public non verbalisation was prevalent until I was on kinder duty and he was talking to me. The surprise on the other children’s faces and his blushing is something I will never forget.

In Prep they thought they had a genius on their hands. He was reading and writing and suddenly everything stopped. There was nothing.

I was told by "experts" in Autism that this was common. That they often have skills when they are young and then lose them.

Years went by and my son’s behaviour went from very placid to aggressive. He would attack in the car, in the night, at meals... really anytime at all. Have you seen the video on Fragile X males being violent? One brother was always violent and the placid brother was becoming violent. The mother’s despair was heart wrenching.

So we called in the Behavioural Intervention Support Team (BIST). They came to our home and drew up programs for the family to curb the violence. They could not believe how quickly my son took on the program. They had not encountered that level of comprehension before and wished all their clients were like that.

The violence dissipated a lot but the "nightmares" continued for decades. So did the self mutilation.

It was only after a traumatic event that my son resumed writing and believe it or not MATHS secondary level. The joy of being able to communicate with my son was indescribable. But that joy was a double edged sword. My son was testing me to see if I was a safe person to tell. And so after many months my son told me of the abuse that had been going on.

This is not a sad story or a fear mongering story. This is a story of triumph. My son is now safe, the nightmares have stopped, the self mutilation has stopped, the violence has stopped and the communication has progressed beyond not only my wildest dreams but to others. My son with the help of Janie Roberts and others now sees a future for himself. He has a future.

I am writing this letter to say don't take the diagnosis, the "this is typical behaviour" for Autistics/Fragile X males as set in stone.

My son was taken to a sexual assault clinic as a child, that was part of the BIST program, had extensive exposure to experts on Autism, was put on Ritilin and not one expert ever picked up that my child was being abused. I was told that his behaviour was simply due to Autism and Fragile X. Whilst there are characteristics of Autism/Fragile X behaviour that unfortunately mirror symptoms of abuse, it begs the question, where was the research done and how much is actually related to abuse?

What I am trying to say is don't pigeon hole your child’s behaviour as “this is what Autistics/Fragile X do”. Just like everyone on the planet they are individuals - it is like saying all blacks are rhythmical, or all Asians are hard workers, etc etc..

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My intention is not to scare you but to let you know what happened to my son because I BELIEVED everything the "experts" told me. I never questioned, challenged. I was too easily defeated. I was hit by the brick wall of research/ diagnosis. After all I was the Carrier mum.

Your child is precious. Don't let someone’s "expert opinion" define their destination.

This story was provided to Janie Roberts, for publication in the fx info newsletter.

A Son’s Contribution The son of the woman who wrote this article wanted to write something from his perspective too. Even though he has been through much suffering he would like to help others with his words.

“Here is what I want to say Help the children to tell what is happening to them.

You have to be vigilant and listen to them even if they can’t tell you with word.

Help them to tell you by the new way of communicating with ipads, with computers and the old way of writing.

Look at books that tell what is right and wrong and what to do. If it happens tell the child not to be afraid to tell. I told and I am still alive. The bad people tell you they will kill you but they don’t. They are worst type of people. Don’t let them get away with it.”

Some Handy Contacts for Support: Kids Helpline: 1800 551 800. Kids Helpline is Australia’s only free private and confidential telephone online counselling service for young people aged between 5 and 25.

Carers Australia and Carer Advisory Service. www.carersaustralia.com.au Has details of Carers organisations in each state (membership free for carers). 1800 242 636 – carer inquiries about information and advice, counselling and support groups, respite, educational and social activities, individual advocacy and the campaign for change.

Commonwealth Respite and Carelink Centre: 1800 052 222 For information on community aged care and disability services in your area and all respite enquiries.

Children with Disability Australia: www.cda.org.au 03 9482 1130 or 1800 222 660 This national peak body represents children and young people (aged 0-25) with disability. It educates the broader community about the needs of children and young people with disability; advocates on behalf of children and young people with disability to ensure the best possible support and services are available; informs children and young people with disability, families and care givers about their rights and entitlements to services and support.

The Raising Children Network: www.raisingchildren.net.au Comprehensive Australian resource for parenting newborns to teens and with a comprehensive section on children with special needs.

Lifeline Australia: 131 114 free, confidential and anonymous 24-hour telephone counselling service for people needing emotional support. www.lifeline.org.au also has information and resources about providing care in times of crisis.

Beyond Blue: 1300 224 636 Works to increase community awareness of depression, anxiety and substance misuse disorders. www.beyondblue.org.au has extensive resources.

Mensline Australia: 1300 789 978 Free, professional, confidential and anonymous 24-hour telephone counselling service for men needing emotional support or in crisis, with a call-back service for continued support. www.mensline.org.au has information and resources about looking after yourself and others in times of crisis.

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Lifelong Learning and one of my X-Teachers - by Dave Jereb My wife Kathy and I are occupational therapists. We worked together at a great multi-disciplinary clinic in Chicago before moving back to Australia and opening MoveAbout Therapy Services. When we moved to Sydney, we were concerned about losing the amazing mentors we had there. Luckily we were able to connect with our mentors via Skype.

We have made lifelong learning a core philosophy at our clinic, with all our OTs and speech therapists having individual professional supervision in their discipline, cross-discipline support and supervision, group video case studies, and Skype mentoring from leaders in the field including Beth Osten (OT), Sherri Cawn (SLP), Diane Selinger (Psychologist) and the amazing Tracy Stackhouse (OT) of Developmental FX in Colorado who has so much knowledge and specialises in Fragile X. While these mentors have been amazing, one of my most important ex-teachers (or x-teacher) was a little guy I worked with who happened to have Fragile X. When he arrived at our clinic for a therapy intensive, it was a time in which our OTs and Speech Therapists were having in-depth discussions about how to support and utilise each other. It was common practice, as it continues to be in the wider therapy community, for speech pathologists to refer kids to OT (who had training in sensory processing) when the child was having difficulties in regulation. Our therapists had received a lot of training in supporting sensory regulation and supporting regulation from an emotional approach. And while these strategies were helpful, they didn’t cut it with this little guy. He could come in happy and excited to play but when the session didn’t follow the plan in his mind, boom! The worst part was that I could often predict what was going to set him off but I didn’t have a way to communicate this to him. When he became disregulated his ears seemed to turn off and his ability to take in language significantly decreased. Sensory-based strategies helped him to be more grounded and Around this time, our speech therapists were in the process of developing a Visuals folder for all of our therapists. I was impatient and printed off some of the pics that I wanted for my friend. This little guy loved playing in our ‘Purple room’ but this wasn’t possible for the first 30 minutes of the 60 minute session we were about to have. But it was possible for the second half of the session. The problem was that as soon as he heard “No”, “Not now” or “We can’t…” he became distressed and wouldn’t hear me say “…until later”. Even if we said, “Yes, but first ‘Orange room’ then ‘Purple room’” he didn’t have the language abilities to understand this and would head towards the ‘Purple room’. This could throw out the whole hour.

My little mate challenged my However this time I was able to show him a picture of the ‘Orange room’ (helping him predict and thinking and understand this change) and the ‘Purple room’ (helping him understand that my answer was had a big actually “Yes, we can go into the ‘Purple room’. First Orange and then Purple”). impact on how regulation is Essentially this was a strengths-based approach in which we were able to utilise his strong visual understood and abilities to compensate for his language difficulties and to support him in his challenges with discussed in our regulation and anxiety of the unknown or new. clinic.

It’s often beneficial for the kids we see to receive both OT and speech therapy but it’s not always possible. Kids with regulation challenges may need support in sensory regulation and sensory diet strategies, emotional regulation and communication supports. It is valuable to identify which areas are of primary importance. For some of our kids, they may receive OT first, for others speech therapy first and for others, both at the same time.

We are constantly learning more about how to best support the families that we see. Lifelong learning is important to everyone and it certainly keeps our therapists fresh and excited about what we do. Sometimes this learning comes from people with more experience (such as our mentors), sometimes it comes from sharing and discussing with people of similar experience (such as our colleagues) or people with different experience (such as collaborating with colleagues of different disciplines). But the most important learning we receive comes daily (and often hourly) from the children we work with and their families.

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David Jereb runs MoveAbout Therapy Services with his wife Kathy.

MoveAbout Therapy Services has been providing occupational therapy and speech therapy services in the Hills District of Sydney since 2007. They incorporate philosophies from the Developmental, Individual-difference, Relationship-based (DIR/Floortime) approach to therapy.

MoveAbout has a commitment to lifelong learning and, in February 2015, MoveAbout will be bringing Beth Osten (OT) and Sherri Cawn (SLP) from the Chicago, U.S.A. to teach their ‘A View From The Floor’ workshop for parents and professionals. www.moveabout.com.au and www.facebook.com/MoveAboutTherapy

Raising Awareness of Fragile X within the Medical Community My name is Katrina Weir and I have been appointed by the Fragile X Association of Australia in the newly created role of medical community communications officer.

This is a part-time contract role funded for 15 hours a week by one of the Association’s benefactors who has been troubled by what he sees as the limited knowledge of Fragile X-associated Disorders in the medical community.

So what does this role entail?

Firstly, it was important to define exactly what is meant by medical community.

To me, it means all the health and allied professionals that have contact with people with Fragile X-associated Disorders and their families. This includes GPs, a wide range of specialists depending on a person’s symptoms, allied health professionals such as psychologists, OT’s and speech pathologists as well as pre-school teachers, special education teachers and maternal and child health nurses. I believe this role is about trying to raise awareness of Fragile X and the importance of an early and accurate diagnosis among as many people working in the health and disability area as possible.

Since joining the organisation, I have conducted an enormous amount of research with professionals working with families affected by Fragile X including GPs, genetic counsellors, psychiatrists, paediatricians, intellectual disability specialists, OTs, and a range of others. This has provided me with extremely valuable insights into the world of genetics and Fragile X, and provided a solid basis from which to write a communications strategy for the FXAA. I have also written a series of key messages for the Association to use when communicating about a range of issues relating to Fragile X-associated Disorders – it includes everything from What are Fragile X-associated Disorders? to How do families receive the results of genetic testing?

The idea is that from now on, the Fragile X Association will use this agreed and consistent language so that they always say things the same way. This will help to limit confusion and to build clarity and understanding about Fragile X. At the time of writing, these documents are awaiting final sign-off and after that, we would be very happy for families to have a copy of the key messages to share with their friends and family as well as their GP, paediatrician, therapists, teachers and other members of their Fragile X management team.

So where to from here? The next steps in this project are to:   uncover new research and other topics that could be presented at relevant conferences   identify compelling speakers who can present this material on our behalf   ensure FXAA stays active and connected on social media through both Facebook and Twitter   explore opportunities for GP education, and  ensure information about Fragile X-associated Disorders on government websites is accurate and easy to find.

I will provide an update of this project in the next newsletter but in the meantime, if you have any questions or suggestions, please do not hesitate to contact me on katrina.weir@fragilex.org.au or call 1300 394 636 Page Page 23 23

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Fragile FragileXXAssociation AssociationofofAustralia Australia

Printed Christmas Cards

$12.00 per pack (incl GST & postage) Each pack has 10 cards of a single design

To order printed Christmas cards: Call: Email: Form:

1300 394 636 support@fragilex.org.au Return this Order Form by post to PO Box 109, Manly NSW 1655 or by email: support@fragilex.org.au

e-cards

e-cards feature the designs hand drawn by Luciana and Miriam in 2013.

://

Fragile X e-cards are available from the mycause website : www.mycause.com.au/gift-cards/create/2852/FragileXAssociationofAustralia The e-cards link is also on the Fragile X website and facebook page.

Or give us a call if you’d like us to email the link to you direct Page 24

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